Type 1 diabetes (T1D) requires demanding daily self-management routines to attain recommended blood glucose levels to avoid future diabetes-related complications. Daily self-management includes monitoring blood glucose levels, estimating carbohydrate intake, exercising, and titrating and administering insulin (Holt et al., 2021). People with T1D (PWT1D) perform self-management tasks in everyday settings, such as home, work, or public areas (Due-Christensen et al., 2019; National Institute for Health and Care Excellence [NICE], 2015). Evidence indicates that in the home, the support of partners enables PWT1D to have more optimized blood glucose levels and engage in positive self-management behaviors (Messina et al., 2021). 

Health professionals (HPs) provide diabetes self-management education (DSME) at diagnosis, when glucose levels are above target, if life circumstances change, and if complications emerge (Holt et al., 2021; National Institute for Health and Care Excellence [NICE], 2015). DSME focuses on the needs, goals, and life experiences of the PWT1D to acquire knowledge and the skills necessary to improve glycemic levels, health outcomes, and quality of life (Holt et al., 2021). However, DSME rarely involves the partner (a spouse or cohabiting partner) (Chatterjee et al., 2018).

Family systems theory (FST) demonstrates that a biographical disruption, such as the diagnosis of a chronic illness, affects the physical and psychological well-being of other family members, including the partner and children. FST has been widely used in health research to theoretically rationalize and demonstrate the impact of diseases and illnesses. A well-studied area is cancer and how it impacts the spouse and the family as a whole (Golics et al., 2013; Rowland & Metcalfe, 2014; Rowland & Oakley, 2023; Wittenberg et al., 2013). It has been established that a cancer diagnosis imposes significant emotional distress on a substantial proportion of people with cancer and their partners, posing numerous challenges. Both members of a couple may experience psychosocial distress, affecting their individual and dyadic functioning. Addressing cancer from a couple-based perspective as a shared stressor can positively impact the psychosocial adjustment and overall functioning of both people with cancer and their spouses. Dyadic coping facilitates a better alignment of needs, mutual sharing of concerns, and support, which in turn enhances relationship satisfaction (Zimmermann, 2015).

Applying FST to diabetes, couples exhibit a dynamic relationship with the illness and its management, influenced significantly by their co-management style. Couples who adopt a collaborative approach, encapsulated by the mindset “let's do it together,” tend to experience more positive and transformative outcomes. In contrast, when the partner without diabetes adopts a directive stance with “you should do it” or remains disengaged with an attitude of “it's your problem, not mine,” the results are less favorable. This highlights the intricate dynamics within couple relationships and their profound impact on diabetes management and partner experiences (Houston-Barrett & Wilson, 2014). Specifically regarding T1D, partners of PWT1D often experience health issues such as sleep disturbances and distress related to hypoglycemia (Tracy et al., 2019). These problems can subsequently impact the PWT1D's self-management, potentially leading to blood glucose values above recommended levels and adverse diabetes outcomes (Messina et al., 2021; Trief et al., 2017).

Discussions between partners about T1D management and support have been shown to improve their mood and collaborative efforts in managing the condition. Improved collaboration is associated with a reduction in negative mood for PWT1D and both a reduction in negative mood and an increase in positive mood for spouses (Helgeson et al., 2022). Based on these findings, it is suggested that DSME would be more effective if both partners participated (Berry et al., 2017).

The relationship between HPs and couples with diabetes is complex, as couples have distinct preferences for the relationship. Among 18 couples with diabetes, some preferred their HP to act as a parent, others as a sibling, some as a colleague, and the rest as an employer. These preferences stem from their individual relationships with their spouses and significantly influence how the couples interact within the therapeutic relationship. An understanding of these relationship dynamics could help HPs structure DSME more effectively and involve both partners in diabetes management (Falke & Lawson, 2015).

Couples generally display similar health behaviors and influence each other's health (Kiecolt-Glaser & Wilson, 2017), which can affect the relationship's quality or function (Robles et al., 2014). Marital quality or family functioning is a subjective, global evaluation of the relationship and connected behaviors (Robles et al., 2014). Better marital quality or functioning (characterized by satisfaction, happiness, support, and closeness) is associated with better health (Robles et al., 2014). In contrast, relationship distress or dysfunction is linked to decreased physical activity, increased depression, anxiety disorders, posttraumatic stress disorder, poor physical health, and increased risk of mortality for both partners (Robles et al., 2014). Spousal support has been seen to be integral to diabetes management. Its effectiveness is significantly modulated by the quality of the relationship and the individual's level of diabetes-related distress. Higher relationship satisfaction can buffer the negative impacts of diabetes distress on glycemic variability, highlighting the importance of relational factors in managing chronic conditions (Houston-Barrett & Wilson, 2014). These findings underscore the necessity for HPs to consider the psychosocial contexts of PWT1D when developing comprehensive diabetes management plans.

Most studies assessing the impact of T1D on couples have employed quantitative study designs (Helgeson et al., 2019; Lee et al., 2020). The few studies that have used qualitative methodologies and methods to explore couples' experiences of their relationship and functioning have focused on either the PWT1D or the partner rather than the couple as a cohesive unit. Litchman (2019) examined 26 older couples individually (26 PWT1D and 26 spouses) and demonstrated that female spouses offer more support to their partners with diabetes than male partners. This includes food preparation, open communication, spouses' readiness to integrate healthy behaviors, and their readiness to support their partners with diabetes beyond hypoglycemia treatment.

Low partner involvement in T1D management, concerns about childbearing/childrearing, and the impact of hypoglycemia and anxiety toward future complications from T1D have also been stated to affect couples living with T1D (Trief et al., 2013). More generally, spouses and family members of PWT1D feel that integrating T1D into daily living, involvement in T1D management, and dealing with hypoglycemia affects their lives in other aspects, such as travelling, eating out, and spontaneity, and is emotionally taxing (Litchman et al., 2019; Rintala et al., 2013). These studies used individual interview methods with either PWT1D or their partner, not joint couple interviews, to explore couples' experiences. Joint interviews can help ascertain how T1D impacts each partner's mental health, emotional wellbeing, and relationship quality. Also, couples' support needs for sustaining or strengthening the relationship have not been investigated. As far as we know, this study is the first to do so.

This study aims to (a) explore the impact of T1D on couples' health, well-being, and relationship quality and (b) identify couples' needs regarding sustaining and strengthening their relationships. Underpinned by interpretative phenomenological analysis (IPA) methodology (Smith et al., 2009), this study explored the everyday experiences of couples and cohabiting partners in which one partner has T1D.

METHODS

Study design

Semistructured individual interviews with PWTD1 (n = 7) and their partners (n = 7) were conducted to enable open expression of each partner's experiences. After this, couples were interviewed together (n = 7) to explore couple interactions, communication, and indication of functioning. Conducting both individual and joint interviews (Smith et al., 2009) facilitated comprehensive insight and understanding of the individual partners' and the couple's shared experience of the impact of T1D on their health, well-being, and relationship quality. This study was granted ethical approval by an authorized institutional review board.

Study participants and settings

Participants

The study included seven married and cohabiting couples (14 participants) aged 18 or older who had been in their current relationship for at least 1 year, lived with T1D for at least 1 year, and were English-speaking. All couples were in a heterosexual relationship; six couples were married, and one was cohabiting. Four couples were in their relationship before the T1D diagnosis (referred to as existing couples hereafter). The median age for participants was 35.5 years (range 27–72 years), with a slightly higher proportion of younger adults. The number of years living with T1D varied between 5 and 48 years, and couples' relationship lengths ranged from 3 to 24 years, as seen in Table 1.

Recruitment

Electronic posters were posted on various websites and social media, while physical posters were posted in relevant public places. The information sheet (including the purpose of the study, qualification of the researchers, and management of participant data), consent form, and eligibility checklist were emailed to interested participants. Returned completed eligibility and consent forms were assessed to confirm inclusion in the study. The researchers aimed to sample eligible participants using maximum variation sampling to include couples of different age groups, various relationship lengths, whether the relationship preexisted diabetes diagnosis, and different durations of living with T1D to explore whether these variations brought about shared or different patterns of experience. Due to a low homogenous response rate, the researchers focused on the information power (Malterud et al., 2016; Smith et al., 2009) of the interested participants rather than the ethnocultural variability.

Data collection

Three interview schedules for PWT1D, partners of PWT1D, and the couple were developed from a systematic review (Messina et al., 2021) and co-developed by a patient and public involvement group established in a previous study. Interview schedules were piloted with the first couple to assess the acceptability of wording and phrasing. Minor revisions were made to enhance clarity. These adjustments did not alter the structure, content, or flow of the interview, ensuring that the experience of the first couple remained consistent with that of subsequent participants.

Interviews were conducted virtually using Microsoft Teams between March and July 2020. Individual interviews lasted, on average, 30 to 60 minutes, and the joint interviews lasted 40 to 75 minutes. Data were recorded using an encrypted dictaphone and transcribed verbatim.

Raw data were analyzed using IPA data analysis technique (Smith, 2011). Analysis followed the six steps delineated by Smith and Shinebourne (2012): (a) The research team (a senior diabetes researcher, a qualitative health geographer, and a diabetes nurse, all with experience in using FST, conducting research on families with diabetes and/or long-term conditions and qualitative data analysis) became familiar with the data by reading and immersing themselves in the transcripts. (b) Three researchers hand-coded data independently. Codes were compared and assessed in a coding meeting, and a code list and codebook were developed to ensure coding consistency across the research team. The data were further coded in NVivo 12 Pro to facilitate coding specificity, audibility, and patterns. (c) Codes were developed into themes. (d) The team iteratively discussed the themes to ensure that the themes mapped over the data. (e) The narrative of each (sub)theme was written, and quotations were retrieved to exemplify the theme content. Finally, (f) FST theory and broader literature were drawn on to contextualize and support the interpretation of data, moving analysis from description to interpretation (Smith, 2011). Reflexive diaries of researchers' experiences, thoughts, and reflections acknowledged their positionality and biases, allowing them to be mindful of their interpretation of the data.

RESULTS

Although the experiences of living with and managing T1D were distinct for each PWT1D, partner, and couple, shared experiences were observed. Themes developed via the IPA data analysis technique included acceptance and adjustment, partnership, spontaneity versus planning, and immediate and long-term fears. The context of adaptation to T1D within the relationships was different. Couples who were in a relationship before one partner was diagnosed with T1D (existing couples) were faced with a new condition in their relationship requiring some changes. Couples who started a relationship knowing that one partner had T1D (new relationships) had to navigate the implications required by the person with the condition from the onset of the relationship.

Theme I: Acceptance and adjustment

A diagnosis of T1D meant that existing couples needed to learn to accept and adjust their lives to the daily demands of managing a long-term condition. However, this was not necessarily a linear or mutual process for the couples as the impact of diabetes were experienced in different ways. Although both partners needed to adjust, the data showed that some PWT1D focused solely on their own adjustments of diabetes and did not realize that their partner also needed to adjust to changes in their everyday routines which is exemplified in the dialogue between PWTD 7 and his partner:

PWT1D 7: For me, it [diabetes] doesn't change anything like, you know, other than having to remember to get Coke and Jelly Babies and not eat certain foods.

Partner 7: But what about the impact it has on me?

PWT1D 7: It doesn't really have an impact.

Partner 7: OK, let me tell you. I think certainly, from my point of view; it's having an influence in our relationship, having to be much more mindful of the other person when we eat. If we go out, thinking about what time we need to eat, do we need to get home in time to be able to eat if we don't? What will happen as a result of that potentially?

PWT1D 7: I do all the more cooking, so you don't need to worry about it.

Partner 7: Yeah, but when we go out, and he hasn't eaten. And then you have a low, and I feel partly responsible for that. So, I think overall you have to be way more thoughtful and thinking ahead in a relationship with a PWT1D than you do with a nondiabetic for sure.

Although in this interaction, the interview was the catalyst for coming to this new understanding, other PWT1D talked about how, over time, they had learned that their diabetes also impacted their partner.

[I was] probably quite selfish at first when I was first diagnosed. I cowered, just being like oh, this is something that's happened to me, so it affects me. But actually, it affects him as well. … It probably took me too long to work that out, I'm the one with diabetes, but it kind of affects both of us. (PWT1D 2)

The opposing views and experiences regarding how and who T1D was affecting made it challenging for couples to adapt. Existing couples discussed how acceptance and adjustment of the condition to their lives was gradual and not always aligned because the diagnosis was unexpected and a “shock” (PWT1D 2). For the PWT1D, the new diagnosis made them “upset and I cried” (PWT1D 3), and their partners reported feeling “scared” (Partner2), “anxious” (Partner7), and “worried” (Partners 3 and 5). Existing partners also expressed feeling trapped by the condition, stating that they were “stuck with it” (Partner 3) or had “no other choice” (Partner 5) but to accept and adjust to the condition because they were unable to “get away from diabetes” (Partner 2).

Our findings suggest that partners found it difficult to relate these feelings to the PWT1D, adding to differences in their view on adjustment. In contrast, new partners who began the relationship postdiagnosis demonstrated more immediate acceptance of the condition because they chose to enter the relationship more aware of the circumstances as they had “always known their partner [as having] T1D” (Partner 1) and felt “less bothered” (Partner 4) by the condition.

Although their experiences around adjustment and acceptance were different, couples highlighted the value of peer support and sharing experiences with likeminded people influenced the integration of diabetes as part of their relationship. Many couples found it “helpful” (PWT1D 1 and 2 and Partner 7) to talk “to other people with diabetes” (PWT1D 1 and 2) or partners of PWT1D “because they [were] experiencing the same thing” (Partner 1) and could provide “some tips” (Partner 7) and valuable advice on how to live with diabetes.

Knowledge and understanding of T1D

Knowledge and understanding of T1D were instrumental in couples' acceptance and adjustment. At diagnosis, PWT1D expressed they “knew absolutely nothing about T1D whatsoever” (PWT1D 5) and “did not really understand what it meant” (PWT1D 2). Meanwhile, some partners (new and existing) had previous exposure to T1D through work or family members with diabetes. Although their level of knowledge of diabetes differed, they had to develop mutual experiential knowledge of the impact diabetes had on their relationship. In general, their knowledge and understanding of what living with diabetes entailed improved over time as couples became more experienced with integrating diabetes into their everyday lives. Couples acquired information from reading about T1D, attending a session as part of structured DSME courses (Couples 2, 3, and 7), exploring social media forums (Couple 6), and linking with charities such as Diabetes UK (Couples 2 and 4).

Changes associated with T1D

Because T1D is permanent, has no cure, and requires extensive self-management behaviors, participants, especially couples in existing relationships, had to make concerted efforts to make the necessary changes to their daily lives to accommodate T1D. These changes ranged from awareness of food choices, planning more for outings and trips, and handbag and carrier bag choices for hypoglycemia kits to significant changes in activities and lifestyle (e.g., holidays and exercise), and for many participants, this felt overwhelming. Couples in existing relationships therefore felt that new demands were imposed on them creating “an added daily hassle” (PWT1D 3), with “quite a dramatic change to daily living” (Partner 2) compared with their lives before the diagnosis. Those in new relationships expressed fewer disturbances to their daily lives because they were prepared to take T1D as they knew no other reality as T1D had “always been … part of our lives” (Partner 4).

Health professional support

The interactions between HPs, PWT1D and their partners influenced participants' perceptions and management of T1D. Existing couples felt they received little help from the HPs, especially in dealing with the emotional effects of T1D on their relationship at diagnosis and the early stages of their diabetes journey. They reported that HPs failed to communicate clearly to participants the effects of T1D on significant aspects of their lives and their relationship quality, such as sexual intercourse, reproduction, and partner sleep disturbances. As a result, participants were distressed and unprepared for these relationship challenges, which prolonged their adjustment to the condition as they had to find their own way without much support. For example, PWT1D 2 stated, “I don't think it's ever been part of a conversation I've had with health care professionals about how [sex] would affect diabetes or diabetes would affect sex.”

Couples felt a need to know more about ways diabetes could influence their daily lives and how they could support each other. However, couples received “no formal support” (Partner 7) from HPs on partner involvement in T1D management. Couples stated that they would like support and advice on “what to do in an emergency” (Partner 3) or just “some kind of education for either a couple or people living with someone diabetic to understand what it means and how it impacts their lives” (Partner 6).

Young couples, in general, felt they did not get the support and guidance from HPs on how T1D would affect family planning, for example, when the PWT1D had complications: “I have got a thing called retrograde ejaculation, which means nothing comes out” (PWT1D 6). In addition, they felt they did not have enough guidance on when to start considering planning for a family, what to do before conception, and what to expect during pregnancy.

Pregnancy and things like that were not mentioned to me, and I found that out myself. It was just thrown at me that people with T1D are more likely to have a stillbirth …, but with the right treatment, you know it, it should be fine. It was just you are X times more likely to have a stillbirth. When you already feel like it [diabetes] is affecting things, and also it is going to affect that, it is difficult. (PWT1D 2)

Theme II: Partnership

The diagnosis and presence of T1D had implications for the couple's relationship dynamic, especially relating to their communication style and roles related to caring responsibilities. Couples had to make decisions about the level of involvement of the partner in T1D management.

Couple communication

The quality of the communication between partners was essential in maintaining a functional and rewarding relationship. Both existing and new couples had to learn how to communicate about their experiences of living with T1D. In existing relationships, both partners had to find a language to express their experiences, whereas the partner with T1D in new relationships could build on prior experiences with communicating about their condition. The couples emphasized the importance of “open” (PWT1D 5) and “honest” (Partner 6) communication to be able to “speak about their fears about living with diabetes” (Partner 4) to help voice their needs and support coping with and managing the condition in their daily lives. Couples needed to find a balance regarding the space discussions about diabetes took up, as some had concerns it dominated their conversations: “it's something we talk about a lot, can't escape it. It's there every day, whether it's just discussing [the] carb content in a meal or her blood sugar levels” (Partner 3).

Partner involvement and support

PWT1D and their partners experienced the impact of diabetes on their lives in different ways. There was not always alignment in views regarding how involved partners should be in T1D management. Some PWT1D indicated they felt diabetes was a personal experience that they were responsible for managing, especially at the time of diagnosis, because “it's something that has happened to you, and you've got to try and cope with it” (PWT1D 2). There were various ways of support in which partners could be involved. Some PWT1D did not want to include their partners in practicalities such as glucose monitoring because they were “quite independent” (PWT1D 5) and did not feel a need for support in this way. Others wanted “to give the impression that I had it [diabetes] under control” (PWT1D 2) and did not want to appear in need of extra attention. For PWT1D who were in relationships where they were able to have open and honest conversations, they involved their partners in the “emotional side of things” (PWT1D 5) to prevent feeling “lost and overwhelmed” (PWT1D 2). In contrast, others expressed involving their partners in all aspects of diabetes management, such as carb-counting, reading glucometers, and practical support.

Some partners wanted to be more involved in the emotional and practical aspects of T1D management but were limited in their involvement because of the PWT1D's preference for self-management due to being “very self-sufficient, and [only trusting himself] with [the] diabetes” (Partner 7). Other partners felt less inclined to be involved because the PWT1D was “so well controlled, that I just don't think about it” (Partner 1) and were comfortable with their current level of involvement. For most couples, involvement in T1D management extended from their day-to-day management requirements to attending hospital and clinic appointments. There were age-based differences related to how often partners attended diabetes appointments. Older couples had better opportunities to attend consultations together, whereas younger couples felt frustrated because appointments were scheduled “in the middle of the day, [and it was] quite hard … to get out of your job to do it” (PWT1D 1). Younger couples advocated for “a bit more flexibility” (PWT1D 1 and 2) around appointments, including online support, so that they could attend appointments and better support their partner.

Relationship impact

When reflecting on the impact of diabetes on their relations quality, couples stated that overall, in the grand scheme of their lives, T1D “didn't affect [our] relationship” (Partner 4) or it had a “low to moderate impact” (Partner 7) “on day-to-day” life (PWT1D 2) because it didn't change how they felt or cared about each other. Older couples, for example, expressed that being in a relationship for a long time meant that they had encountered many challenges together and that “it … brings us closer together when we've been through something horrible” (Partner 3). Younger couples, by contrast, were concerned about the future impact diabetes could have on the developments in their relationship, especially regarding family planning. “I think that is one of the things that can interfere in our relationship that … maybe [in] this relationship you can't have a spontaneous decision like oh I'm going to get pregnant” (PWT1D 1). As such, couples felt they needed professional and peer support, especially the younger couples and those early on in diagnosis, to address issues that could influence their relationship, and help to sustain, or enhance their partnership in living with T1D.

Theme III: Spontaneity versus planning

For both new and existing couples, the way they went about their daily lives was affected by T1D. Couples expressed how they could not “just do things spontaneously” (PWT1D 2) and that they “constantly [had] to plan” (PWT1D 5). For some couples, this resulted in some limitations to their activities because they felt more secure sticking to routine. Couples needed to engage in higher levels of detailed additional planning, such as space for regular glucose monitoring and ensuring availability of carbohydrates, before engaging in present and future activities such as traveling, exercise or sexual intercourse. “You have to plan everything a bit more. And yeah, you cannot just go out. … It feels like everything has to be a bit more planned than that. Tedious, isn't it?”(PWT1D 4).

Diet and meal planning

Meal planning was a normal part of the couple's lives; however, its importance and the intensity of detail had increased and was experienced as “a little bit stressful” (PWT1D 1) compared with their lives before T1D or to couples without T1D. Couples had to plan what and when to eat and how often and where to get their food choices and meals, keeping in mind their required daily carbohydrate intake to try to keep glucose levels close to the normal range.

“You are always going to be thinking, I am going to eat this, I am going to give this much insulin, I'm going to exercise, I'm going to bring it [blood glucose value] down, maybe now I'm working too much, I feel it's going low, I have to stop, I have to eat, I have to bring stuff, so it's almost like part of your task management. (PWT1D 1)

Interruptions

Most couples experienced interruptions due to T1D. Interruptions could range from the beeping sound from their insulin pumps to significant disruption of activities such as sleep or sexual intercourse because of hypoglycemia, lack of desire, or diabetes management technologies getting in the way. “You have to make room for the [insulin] pump. You know, I say in bed, when you are physically active in that way, and sometimes it detaches [or gets] tangled” (PWT1D 2).

Couples equally expressed that T1D does not just interrupt specific activities in their daily life but, their lives entirely. This was due to the significant changes they had to make to accommodate self-management behaviors, navigate social life, and balance activities to be able to accept, adjust to, and manage T1D in a way that applied to them.

There are certain things that we do and certain things that we don't do, I suppose, in many aspects now. We don't go out. We don't go to the pub. … But, I mean, I like to drink, but I don't drink as much now. (Partner 4)

Sexual intercourse

Couples expressed the need to be more conscious about planning their intimate life, as expressed by one of the participants: “before we have sex, I have got to test my blood” (PWT1D 4). Having to snack before sex was also mentioned, which meant that couples could not “be spontaneous with sex” (PWT1D 6). This need for adjustment often took some of the fun and spontaneity out of intimacy, which was different from couples without T1D.

Couples expressed much frustration around the interruptions this had on their sexual life and how it interrupted their sexual mood and drive: “It can be a bit frustrating like thinking of having sex [in] a more fun way, but there is no fun way of having your blood sugar low due to sex, it's just a mood killer” (PWT1D 2). To manage the interruptions in their sexual life, moods, and drive, they made mental shifts and adjustments. These changes helped them stay connected and satisfied in their relationship by using different coping strategies, being more aware of their partners' feelings, and dealing with these mood swings:

if it [T1D] does affect us, it has to do with hardiness or stress. Grounded down to its relentlessness, that just means that if we're not in the best mood, and we both got to be in the best, right mood for us, it's not gonna happen. … Um, you just have to go with the flow; there's nothing you can do. Yeah, I suppose sometimes it might be a little frustrating, but what can you do? Just have to wait and hope that things are better another time. (Partner 3)

These couples also had to make physical adjustments to their sexual life to accommodate T1D. This included managing blood sugar levels before and after intimacy, integrating diabetes management tools such as insulin pumps and sensors into their intimate routines, and finding comfortable positions that took into account any physical discomfort or complications related to T1D: “We have to be careful because I have lots of things on my body from like the pump and I have the sensor so sometimes I'm just worried that it might come off” (PWT1D 1).

Although some PWT1D voiced their need for support from HPs around coping with T1D and sexual activity, it felt “awkward to bring it [sex] up” (PWT1D 2).

Theme IV: Immediate and long-term fears

Living with T1D introduced a different layer of fears into the relationship. For example, couples expressed concern for immediate anxieties such as fear of having a hypoglycemic event that potentially have serious consequences for the PWT1D. Most partners feared the PWT1D having hypoglycemia in their absence because they would not able to assist them or help prevent an event; consequently, they felt anxious when their partner was alone. Couples also feared nocturnal hypoglycemia, with partners expressing “[hypoglycemic events] can be a bit scary” (Partner 2) due to the distress of the situation.

PWT1D were equally aware of the seriousness of hypoglycemia and its consequences. This fear of hypoglycemia had an influence on sleep quality and activity management in the present and, if not addressed, could lead to long-term diabetes-related distress in both the PWT1D and their partner: “It is kind of scary. … It is that constant threat that it could all go wrong; I might wake up at night, and I am not still breathing” (PWT1D 4).

Fear of future complications

Couples feared that if diabetes was not well managed, the PWT1D might develop complications that “might impact the future” (Partner 1), which could potentially reduce their quality of life. More time would then have to be spent on managing the consequences of diabetes than enjoying their mutual relationship. They feared complications could “shorten … life and [our] relationship together” (Partner 2).

Some couples already experienced complications such as sexual dysfunction, while others were explicitly concerned about potential risks related to pregnancy or possible future complications of T1D.

Fear of change in partner role

Although changing of role and responsibilities are natural in a long-term relationship, PWT1D were both worried about a change in their own role as a partner and their ability to fulfill their role if future complications resulted in them having less control over their lives and being more dependent on their partner. “Instead of being well and an equal partner, you feel a bit more like you are being cared for, which is a bit, you know, depressing then” (PWT1D 3). The older couples expressed this concern about change in partner role, whereas younger couples were more concerned about their ability to start a family and take on the role of parents.

DISCUSSION

Couples living with T1D experience relationship challenges and have unmet support needs. The challenges relate to acceptance and adjustment, partnership, spontaneity versus planning, and immediate and long-term fears. The length of the relationship and whether T1D was diagnosed during or before the relationship influenced how the couples accepted and adapted to these challenges. It was essential to develop open and honest communication to maintain partnership regarding managing T1D and allowing both partners to communicate their needs. Although couples stated that T1D did not affect their relationship in terms of how they felt about each other, it did affect their daily lives and their ability to be spontaneous and required extensive planning. Irrespective of the length of the relationship, all couples experienced fear related to hypoglycemia and fear of ill health and the future.

In addition, younger couples experienced concerns and uncertainty around family planning. Finally, most couples expressed inadequate HP support around aspects such as the diagnosis of T1D, partner involvement, intimacy, and family planning—for example, when to start considering planning for a family, what to do before conception and during pregnancy, and possible complications and risks such as stillbirth.

Acceptance and adjustment to T1D are crucial for a supportive relationship, and it is a complex, challenging, and gradual process (Due-Christensen et al., 2019). Couples in new relationships in this study were less challenged with accepting and adjusting to T1D because acceptance of it occurred at the start of their relationship. In contrast, disclosure of living with T1D before marriage has been observed to be problematic among South Asian populations living in the United Kingdom, as potential spouses and families (if an arranged marriage) were often deterred by the perceived concept of T1D being hereditary (Patel et al., 2011). This suggests that disclosure of T1D or a chronic condition is essential in early couple discussions and relationships to improve partner involvement in management, although it may be complicated or challenged by cultural beliefs or some community practices.

T1D is not well understood among the general population, which influences acceptance, especially for couples newly diagnosed. Being constantly worried and concerned about changes in thought processes, daily routines, and lifestyle, such as diet, exercise, and holiday arrangements observed in the couples in this study has been observed in other couples living with T1D (Helgeson et al., 2019; Trief et al., 2017), myocardial infarction (Dalteg et al., 2011), and other chronic conditions (Eriksson et al., 2019). These concerns were heavily felt, especially as HPs failed to provide couples with the information about what to expect and emotional support to adjust and involve their partners in management. Although support from HPs was lacking, couples expressed that having open communication with their partners helped meet their needs and strengthened their relationship quality. This was also observed in a study by Lee et al., (2020) and is similar to the experience of couples living with Lupus (Fekete et al., 2007). People with lupus found emotional support from their partners beneficial because it improved psychological well-being and marital satisfaction and reduced depressive symptoms (Fekete et al., 2007). This indicates that more detailed and targeted education programs for T1D and other long-term conditions would benefit the population.

It is noteworthy that the combination of individual and joint interviews was perceived as “therapeutic.” Couples actively reflected on T1D and its impact during the individual interviews. They brought forth these reflections in the joint sessions, where they expressed their views and opinions on the impact of T1D. Joint interviews revealed that although couples stated that they talked openly about T1D, the interview setting allowed them space to talk and reflect on issues they found challenging to discuss. Having deep, planned, and frequent conversations about T1D and how it affects couples would likely be beneficial for planning the management and processing of the impact T1D has on the couple.

Couples in existing relationships required more support from HPs around diagnosis to engage partners in competently supporting the PWT1D. Couples would appreciate more information about where to access formal support. This was echoed among other couples living with chronic and genetic conditions (Eriksson et al., 2019).

Couples expressed the need for professional counselling, HPs' involvement of partners in diabetes management, provision of educational courses, and creation of peer-sharing forums (among partners of persons with diabetes and couples) as essential in improving couple management of diabetes and increasing relationship quality. Identifying these needs illustrates the importance of co-designing interventions for couples.

As other studies have highlighted, in the absence of formal support from HPs, couples sought information from other sources such as charities, social media, peers, and family from whom they gathered practical and emotional support, which helped them cope and adjust to the condition (Falke & Lawson, 2015; Messina et al., 2021).

The need for support from the partner in T1D management varied depending on the length of the relationship and the couple's age, with older couples having more flexibility in providing physical support for the PWT1D, like attending hospital appointments. Younger PWT1D were more prone to perceive T1D as “theirs” and not a shared condition. In a study among young PWT1D involved in a romantic relationship, most participants perceived it as theirs, influencing partner involvement and support (Helgeson, 2017). Meanwhile, a study of older Chinese couples with T2D diabetes revealed that older couples considered the condition to be shared, with partners reminding them of medications, monitoring glucose levels, and attending hospital appointments (Litchman et al., 2019).

Couples stated that T1D did not influence how they felt or cared about each other, but it caused interruptions to their daily lives, such as disturbed sleep, reduced spontaneity around intimacy and sex and changes to their social life due to episodes of hypoglycemia or the fear of hypoglycemia. Other partners of PWT1D have expressed sleep interruptions and reduced sleep quality due to the fear of or after an episode of nocturnal hypoglycemia (Messina et al., 2021; Tracy et al., 2019).

An essential finding of this study was how the need to plan sexual activity to avoid hypoglycemia was troublesome for most couples, leading to reduced sexual desire and satisfaction, which brought about relationship distress. It has been demonstrated that sexual satisfaction is linked to marital satisfaction because it fosters physical and emotional bonding (Brezsnyak & Whisman, 2004). Hence, reduced sexual spontaneity and increased sex planning threatens the relationship. In a study with adults with T1D, of which 69% (n = 151) were living with a spouse or partner, participants expressed a lack of sexual spontaneity; interruptions and discontinued sex; fear of hypoglycemia during sex; and feelings of frustration, embarrassment, insecurity, and humiliation associated with not being able to complete a sexual activity (climax) or get an erection (Chatwin et al., 2021).

Couples expressed long-term fears such as concerns over future complications associated with T1D, shortened lifespan or effects on future reproduction if the condition is not managed well. Fear of the future and complications have been observed in other couples living with T1D (Litchman et al., 2019), other couples with T2D, and others with chronic illnesses (Eriksson et al., 2019). Persons with chronic conditions feared losing their independence and their partners' roles changing to carers. In contrast, partners were more concerned with supporting persons with chronic conditions in managing the condition to prevent future complications.

Limitations and strengths

This study is the first to combine individual and joint couples' interviews and assess couples' support needs. The couples varied in their relationship length, age, and years of living with T1D. They were safe and secure in their relationships to consent to an interview to express their experience.

A limitation of the study was that, despite attempts made toward maximum variation sampling, we did not recruit an ethnocultural sample; instead our sample of people with T1D was homogenous—mostly white British and mostly females with the diabetes diagnosis. This does not reflect the broader T1D population because males have a slightly higher incidence of T1D (Holt et al., 2021). We were, however, able to explore male perspectives by interviewing male partners and the couple together. The lack of ethnocultural variability diminishes our understanding of cultural differences in how couples live with T1D. Finally, the need for privacy in undertaking interviews was essential. As these interviews were conducted virtually with participants in their homes, this could not always be guaranteed, which could have affected the quality of data collected.

Implications

Based on FST, which emphasizes the interconnectedness of family members and how each member's biographical disruptions (e.g., diagnosis of disease/illness) and life cycles (e.g., management and flare-ups related to disease/illness) impacts the entire family system. The study's findings therefore highlight several important considerations not only for married and cohabiting couples with T1D but has applicability for couples and cohabiting partners experiencing a new diagnosis and/or living with other long-term conditions, particularly for understanding the impact on their relationship and needs.

This study found that T1D significantly impacts couples' relationships. How T1D was understood and communicated within the relationship was crucial in how couples manage the condition. Couples in established relationships faced more challenges with T1D diagnosis and daily management compared with those in new relationships.

The uncertainty and fears about hypoglycemia, future complications, and the impact on reproduction and relationship quality heighten stress among couples, as such couples expressed a need for increased support from HPs, refresher courses, and a peer-sharing platform to enhance T1D management and relationship functioning. Also, HPs need to be more explicit in providing information and addressing sexual concerns, whether or not the PWT1D or their partner asks for this. This implies that HPs need to design self-management programs that actively involve both partners. This aligns with the FST principles, which emphasize the importance of interconnectedness within family systems.

Given that established couples face more challenges, HPs should provide tailored interventions that cater to the unique needs of long-term relationships, including partner support at diagnosis, refresher courses, and ongoing support. They should also address concerns about reproduction and T1D management, as this could help couples make informed decisions and reduce anxiety about the future. They can facilitate peer-sharing platforms where couples can share experiences and strategies. FST posits that external support systems can provide additional resources and emotional support, further enhancing the couple's ability to manage T1D.

Likewise, therapists should encourage couples to discuss T1D-related concerns and fears openly. Effective communication within the relationship can help reduce anxiety and build a stronger partnership in managing the condition. They should be aware of the emotional toll T1D can have on both partners. Providing a safe space to express emotions and offering strategies to manage stress and fear can improve relationship quality.

Therefore, future research should focus on developing interventions co-designed by couples living with T1D and HPs. This collaborative approach ensures that the interventions are relevant and effective. Given the broader applicability of the study's findings, research should explore how similar interventions can be adapted for other long-term conditions. Also given the limitation of this study involving primarily White participants, research should investigate how different cultural, socioeconomic, and demographic factors influence the relationship dynamics and management of T1D within couples.

Conclusion

This study highlights the profound and multifaceted impact of T1D on couples' health, well-being, and relationship dynamics. Through the lived experiences of seven couples, it became clear that the journey with T1D is marked by significant challenges, ranging from the initial process of acceptance and adjustment to the ongoing demands of planning, partnership, and navigating both immediate and long-term fears. The findings reveal that the way couples communicate, adapt, and support each other fundamentally shapes not only their health outcomes but also the overall quality of their relationship.

The study affirms the relevance of FST in understanding how chronic illness reverberates through intimate relationships, influencing both individual and collective well-being. It calls on HPs to move beyond the individualized model of care and embrace couples-based approaches that recognize the interconnectedness of partners managing T1D. Future research should focus on co-designing interventions for diverse couples, addressing cultural, socioeconomic, and demographic nuances, and extending this approach to other chronic conditions. Ultimately, supporting couples to navigate the challenges of T1D together not only enhances diabetes management and health outcomes but also builds resilience and strengthens the bonds that sustain relationships in the context of long-term illness.